New Jersey Family Gathering

June 4th, 2016

Tom and Maria Rebbecchi are hosting a Glut1 family gathering at their home in New Jersey on July 16th.  They are inviting all families from the surrounding areas to join them for a fun day of meeting and sharing.    Please see details below and RSVP by July 7th if you are able to attend!

Spring 2016 Newsletter

May 12th, 2016

  Our Spring Newsletter is ready and posted to our website at the link below.  You’ll find updates on the results of our Love Some1 with Glut1 campaign, our Research Grant Award program, 2017 conference planning for our Nashville gathering, and some great family updates. Spring Newsletter  

Gears for Gracie

April 17th, 2016

The Snyder family is hosting their second annual 215 Jeep Crew supports “Gears for Gracie” because they are Geared Towards a Cure for Glut1-ds! If anyone is in the Philly area, they would love to have you join them. Last year they raised $3500 at the event and hope to beat that total this year. Please contact Joanna with questions or for more information! June…

Miles for Millie

April 3rd, 2016

Come join us, the Meisner family, for an event to benefit research for Glut1 Deficiency! Our sweet Millie, and the amazing kids sharing this Glut1 journey, are our inspiration and we are riding toward finding a cure for Glut1. Penn Medicine’s Orphan Disease Center (ODC) is sponsoring the Million Dollar Bike Ride on May 7 to raise money for rare disease research. Our team is…

Argentina Family Meeting

March 30th, 2016

A beautiful message from Vivian Mathis, creater of Glut1mom.com: Hug for the soul To have the opportunity to get together with parents whose children have the same syndrome as yours is an indescribable experience, a unique and happy experience. You can greet them and hug them as if you’d known them your whole life; you want to ask them a million questions, and you realize…

FACES epilepsy conference at NYU Langone Medical Center

March 21st, 2016

For those in the New York City area, there will be a FACES conference (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center on April 10th. There will be updates on cannabis therapy, genetics, and some of the issues faced by epilepsy patients. Dr. Eric Kossoff and Dr. Mackenzie Cervenka will share information on ketogenic diets from infancy to adulthood and the…

Lanes and Links on the Lake

March 10th, 2016

  We thank the Treland-Neumann family for a seriously fun and seriously successful annual fundraising event – Lanes and Links on the Lake. The 2016 edition was held this past weekend at Pat’s Landing Resort in Hayward, Wisconsin, with ice golf and frozen turkey bowling!  They raised over $9300 this year, splitting the proceeds between the Glut1 Deficiency Foundation and the Hayward Community Food Shelf…

Love Some1 with Glut1 fundraising campaign

February 14th, 2016

The annual Love Some1 with Glut1 is underway!  From Valentine’s Day to Rare Disease Day (February 29th), the campaign raises money to support the important and impactful work of the Glut1 Deficiency Foundation and its mission of educating others, increasing awareness of and advocacy for Glut1 Deficiency, providing a forum for sharing support and resources, and helping fund researchers as they work for better treatments and…

New Key Terms Resource

February 10th, 2016

The Education Committee has developed a Key Terms in Glut1 Deficiency resource.  We have compiled the most common medical terms associated with Glut1 Deficiency and provided definitions and video examples of some of the symptoms.  We hope this resource will help patients and families better understand the condition and help those still looking for a diagnosis to find one.  We appreciate the videos families have provided…

Winter 2016 Newsletter

February 6th, 2016

Our latest newsletter has been posted to our website and you can find it at the link below.  Some highlights include news of the upcoming annual Love Some1 with Glut1 campaign, our revamped Research Grant Program, and some newly developed resources we have available. Winter 2016 Newsletter